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Typo aside, those are very different things. Coping is not treating, and pacing is coping in the same way as not buying stuff is coping with poverty. It obviously doesn't treat it. No sane person would ever argue that. And yet here we still are, otherwise smart professionals essentially saying...

So, aside from the shortness of breath type, which has no counterpart, those amount to ME/CFS, fibromyalgia, and the last one would typically be labeled as FND. And likely with some crossover, and possibly fluctuations that move patients to and from those types. It's hard to put into...

That would indeed be the very definition of recovery. But this is really, really bad, and also known to us for many years, reported by millions, to widespread clinical indifference: Although kind of not helpful on the 10 year thing. There is no significant cognitive decline between 20 and 30...

There is often a display of the multiple dimensions (the spider web thing) and they usually find that on the mental axis pwME are fine. Which, considering our horrible quality, is actually a testament of how irrelevant it really is. We are resilient AF. It's specifically when it's added up as a...

NIHR hosted a webinar on Long Covid Kids, titled "What are the next steps for Long COVID research?". Given their funding of the ClocK study, which specifically aimed and delivered denial of LC (oh, and a study that concluded that someone should study LC, such shmart people), I don't know if it's...

:wtf::banghead::banghead::banghead::banghead::banghead::banghead::banghead::banghead: FFS this is just fanatical at this point. If we're talking about healthy eating habits, and this is clearly far more complicated than that here, there is zero need to coax this in some behavioral intervention...

Yeah I have seen that there seem to be changes in opinions over this, unfortunately warming up is not an option for me. Although it may have played some role, I definitely overdid it in a way that is, at least to a point, my fault. It's so hard to do so little, and to resist doing more even when...

Indeed they do. This has clearly been a pattern with this type of research, and especially this group of, uh, "researchers". Along with the practice of splitting papers to present rosy cherry-picked conclusions in one paper and burying the data that disprove them in another, or not at all. Those...

Ah! I've seen her stuff, follow her on twitter. She spends a lot of time chasing after this kind of fraud, obvious copy-pastes that are hard to notice unless you're really looking for them. Glad it worked out, but this is one bad apple who remained in, in fact was top of, the bunch for a long...

I see what you did there. LMAO. Early-onset hereditary isolated non-neurogenic orthostatic hypotension in a Swedish family, 2023, Jan Fagius et al

MEAction has announced that they will be hosting the Body Politic community, which was one of the main nexus from which Long Covid advocacy, and the two significant patient-led studies, originated. I know there are still some concerns about the overlap and differences with LC, but I look at the...

Unfortunately, very small beans. Individual projects requesting up to $300,000 will be considered. The estimated total available budget related to this RFP is $900,000.

It's missing pretty much all morbidity from discriminated chronic illnesses so, yeah, way larger. If they can miss so many dangerous diagnoses, and we know they miss over 90% of some chronic illness diagnoses, it's probably several times larger. And definitely not unique or particular to the...

Burden of serious harms from diagnostic error in the USA https://qualitysafety.bmj.com/content/early/2023/07/16/bmjqs-2021-014130 Ironically, BMJ, a major contributor of diagnostic errors. But then so is pretty much everyone, it's systemic failure so everyone is complicit in one way or another...

The first part is a nightmare. The risks and disability are real, but healthcare aren't concerned so they keep doing nothing. And the last part is missing an explanation made very obvious by their choice of outcomes: of course they're presenting to healthcare, just not hospitals, and they're...

WTH is even happening here? This is not ambiguous or hard to understand. They are explicitly refusing to correct an incorrect number published in their journal. Which is clearly more than a pattern, it's a systemic practice, including the initial publication of easily verifiable incorrect...

Definitely, but this problem is massively amplified in a context of open label trials with biased subjective outcomes that mostly amount to "we're experts, we say so", multiplied again by the fact that what is being evaluated is a black box made up of a bunch of different things and involve...

Clearly the strategy. Delay long enough and you can simply say that it's all in the past, even if you are responsible for that delay in the first place. As if the past doesn't affect the present, I guess is what they're bizarrely arguing. And it's not as if 12 years is actually that much time...

Unnoticed is a very passive voice for something that is not a passive thing to do. Very much like the "invisible illness" language. It's not invisible when you explicitly refuse to look what is right in front of you.

By far the biggest flaw and biasing element in this methodology: change the people and you change the outcome. That's voting with a few extra steps. A cornerstone of science is, well, exactly the opposite of that.